Description of the condition
About six million people are currently affected by dementia in Europe (Ferri 2005; Wittchen 2011). The majority of people with dementia live in their own homes, either alone or with others (Gitlin 2008; Phinney 2007). Some attend community-based services such as day centres, which offer activities and provide caregivers with regular short-term respite from care (Brataas 2010; Mossello 2008). Living in their own familiar environment may enable people with dementia to maintain their social networks and enjoy a better quality of life (Luppa 2008).
People with dementia experience a progressive cognitive and functional decline, limiting their ability to perform activities and to communicate. Furthermore, more than 80% of people with dementia living in the community may experience at least one behaviour which is challenging for the caregivers, such as apathy, delusions or aggressiveness (Cheng 2009; Shaji 2009), and up to 50% may experience depression (Lyketsos 2004).
Meaningful daytime activities have been identified as unmet needs of people with dementia living in the community (Johnston 2011; Meaney 2005; Miranda-Castillo 2011). People with impaired cognitive function have fewer social interactions and participate less in activities, both in the community (Holtzman 2004; Krueger 2009) and in long-term care facilities (Chen 2000; Dobbs 2005). This lack of participation in structured or social activities may increase the risk of challenging behaviours related to dementia (Cohen-Mansfield 2011).
People with dementia have expressed their wish to be involved in meaningful activities that meet their interests (Phinney 2007; Vernooij-Dassen 2007). Engaging persons with dementia in personally-tailored activities may not only contribute to meeting their unmet needs, but may also have positive effects on their challenging behaviours and quality of life. These benefits might positively influence caregivers' burden and well-being. Personally-tailored activities could be beneficial irrespective of the severity of dementia, since a significant sense of self-identity can persist until advanced stages (Cohen-Mansfield 2006; Hubbard 2002; Mills 1997).
Description of the intervention
Interventions offering personally-tailored activities to people with dementia in community settings are considered to be 'complex interventions'. They offer different types of activities based on different models or frameworks, and vary in how the interventions are provided and in the number of possible outcomes (Craig 2008).
For this review, activity is conceived in terms of occupation, i.e. pursuits that typically extend over time, have meaning to the performer, and can involve multiple tasks (Christiansen 2005, p. 548). Activities should be personally-tailored, which means that their object should be chosen after assessing the individual preferences or interests of the participants, and could also be adapted to their cognitive and functional status (Cohen-Mansfield 2009b).
Interventions can be based on specific models or concepts, e.g. the principles of Montessori or the concept of person-centred care. We will include interventions aiming to improve psychosocial aspects such as challenging behaviours or quality of life of people with dementia. Those interventions exclusively aiming to improve the cognitive function or other particular skills (e.g. communication, basic activities of daily living) will be excluded. We expect a wide range of activities to be offered, including instrumental activities of daily living (e.g. housework, preparing a meal), arts and crafts (e.g. painting, singing), work-related tasks (e.g. gardening), and recreational activities (e.g. games). Interventions can be delivered at the participant’s home or in community-based services (e.g. day centres), in groups or individually. Duration and frequency of the sessions can differ, and expected providers of the interventions include various professionals or a multidisciplinary team. An informal caregiver can also provide the intervention if he or she has been trained to do it.
How the intervention might work
Being involved in personally-tailored activities may engender positive emotions such as interest and feelings of engagement, and decrease challenging behaviours (Cohen-Mansfield 2007; Farina 2006; Harmer 2008; Phinney 2007). The generation of positive emotions could function as a resource for the management of stress and regulate a range of negative emotions (Fredrickson 2000) such as feelings of boredom, loneliness (Cohen-Mansfield 2009a), non-meaningfulness, frustration or distress (Steeman 2006). Benefits might also arise because personally-tailored activities could facilitate the evocation of autobiographical events (Guétin 2009), preserve the identity of people with dementia (Harmer 2008), fulfil individual occupational needs not covered due to the debilitating effects of dementia (Kitwood 1992), and enhance the use of remaining abilities.
Participation in personally-tailored activities may improve quality of life of people with dementia by improving their challenging behaviours and giving them the possibility to participate in activities (Burgener 2002; de Boer 2007; Ryu 2011). Other positive effects can be improvement or maintenance of functional or cognitive abilities (Guétin 2009), and reduction of the prescription of psychotropic medication.
Expected benefits for caregivers are decrease in their burden of care, which has been associated with challenging behaviours of the person with dementia (Rocca 2010), and improvement of their psychological well-being. Caregivers might also experience an increased sense of competence by participating in the planning or administration of personally-tailored activities to the person with dementia.
Why it is important to do this review
Few studies have evaluated complex interventions offering personally-tailored activities for people with dementia in community settings (e.g. Cohen-Mansfield 2006; Gitlin 2008). Since most people with dementia live in their own homes, information on effective interventions engaging these people in such activities is needed. So far, no systematic review has evaluated the effects of interventions offering personally-tailored activities for people with dementia in community settings. Due to the expected variation and complexity of the included interventions, this review will describe not only their effects but also their characteristics (e.g. components, intensity and performance). Information on the implementation fidelity will be incorporated, e.g. exposure, quality of delivery, participants’ responsiveness and adherence (Shepperd 2009). The results of this review will provide valuable information for making decisions on the implementation of available activity programmes and for developing new complex interventions aiming to improve psychosocial outcomes for people with dementia living in community settings.